Texts:
(from a friend)  How’s your dad?

(response from me)  Hi!  Sorry for not responding to your last text, haven’t been great w/ keeping up w/ stuff lately.  He’s talking a little better & even walking w/ a walker in therapy.  He’s still discouraged though & not sure about going ahead w/ radiation & chemo.

---

(from another friend)  I can’t stop thinking about the decision your dad has to make about treatment and I really don’t know what I would do if I was in that position.  Praying for guidance and peace for your family.

---

(from me to yet another friend)  Have one [a glass of wine] for me.  I just picked up chocolate cake & chocolate ice cream for me… We all have our vices.

 

Nana’s Notes:

Improvement everyday. 

Went to radiation oncologist for consultation on radiation treatment.  Doctor explained it; wanted us to make appointment for next week for mapping & molding cap for the treatment.  

Papa felt overwhelmed & didn’t want to make another appointment.  He doesn’t want to do treatment.  Just wants God to take him home.  He is sure he will not get better & doesn’t want to live this way.

Kari met us at the appointment.  The rehab took Papa & me there.

We talked a lot about whether or not to do treatment.  Doctor said without it, the tumor could come back in about a year.  Quality of life will decline.  With treatment, tumor could come back in 2-5 years, but some take longer than that & have good quality of life.  Side effects should be minimal.

Radiation oncologist suggested we make an appointment with the chemo oncologist.

Mark, Kari & I, and friends want Papa to do treatment, but understand his hesitation.  He says “Why prolong life without quality?”

Got a bouquet of flowers [at the rehab] from Papa’s old job – [arrangement was] in a paint can.  “How appropriate!,” Kari said.

 

My Reflections:

Nana slept over and the boys hang out w/ her in our guest room while she gets ready to go visit Papa:

Just being with Nana and being their usual silly selves.

 

Today’s a big day.  We’re meeting with a radiation oncologist to discuss treatment options for Papa.  Papa & Nana will arrive at the appointment from rehab in a transport van, while I plan to drive over separately from home.

These days getting coverage for the boys is getting more challenging.  Extended family is busy or traveling and I hate to ask friends who have multiple children of their own to care for.

How about adding another three kids?  No sweat, right?  

I’m sure they’d help if I asked, but I don’t want to put them in a tight spot if they can’t, or make them feel guilty.  Perhaps it’s a pride thing; it probably is.  Truth be told, I don’t want to be pitied.  It’s no fun feeling “needy.”  I’d much rather be the one helping than the one asking for help.  Right or wrong, I hate making the calls to ask for help.

A couple family friends, grandmothers themselves, have offered to help though, and it’s one of them I’ve called upon to watch the boys today while I’m at Papa’s appointment.  So appreciate her willingness to help, so relieved she’s available.  She makes this awkward position of neediness just a little bit easier.

I’m on a tight schedule with fitting it all in today, but hopeful it will all work out:  drop kids off, arrive to Papa’s appointment, meet with doctor, pick boys up, head to J Jr.’s school for a meet & greet with teachers…..  Not a lot of margin for error, but that’s how we’re rollin’ these days.

After dropping the boys off, I meet up with Nana & Papa at the doctor’s office.  And then we wait, and wait, and check our watches and wait some more.  I don’t have a lot of time to play with and I’m feeling the crunch.

Finally the radiation doc appears.

He’s optimistic, encouragingly so, as he tells us about what treatment procedures he recommends for Papa, etc.; going even so far as to say that he’s seen people survive with Papa’s type of cancer five years and beyond after treatment.  We can’t help but question him on this:

“But what about someone of Papa’s age with his underlying health conditions?,” we ask.

The doctor admits that the patients he’s speaking of are indeed younger and in better health.

“And what should we expect if Papa doesn’t choose to seek treatment?,” I want to know.

The doctor says we can’t be sure, “Perhaps 6 months to a year?”

“And with treatment?” I ask.

The doctor says we can perhaps expect 2 years, but maybe more.  Again, we can’t be sure; all cases are different.

And he goes on to tell us more, but I don’t have a lot of time at this point.  It’s time for me to go. Past time.  And I’m glad I’ve been able to meet the doctor, get his input, and ask my questions, but now I must excuse myself,  not being sure of whether Papa will decide to pursue treatment or not, not being sure myself what to make of what we’ve learned today.

There’s not much time.

I mean, right now, right here, there’s not much time to grab the boys and make it to the meet & greet.  But missing that isn’t an option.  There’s a box of school supplies to pick up and a teacher to meet and a desk to find with my son’s name on it.  None of which is personally very important to me right now, but all of which is important to J Jr.

So happen, it must!

And with a flurry and scurry and loading and hurry, the boys are picked up and rushed to school. With 5 minutes to spare before the bell rings signaling the end of the meet & greet.  And that’s all it takes to fly from parking lot to classroom, three boys in tow.  A bit breathless, but there. Teacher met, desk found, supply box in hand.

Oh what a crazy life this is.

After we arrive home, an angel of a friend drops by dinner.  And a freezer meal for another night too.

Words of thanks do not suffice.

Later, when dinner (thoroughly enjoyed by all) and dishes are done, I head to the basement.  Not to cry or rest or zone out. But to fix something.  To caulk and paint, and put up the final trim pieces on my crafting nook. That crafting nook I dreamed up and Papa made into a reality.  That crafting nook he was helping me finish the day we first found out about this crazy cancer business.  When bead board was hung wrong and words began to mix, till speech was altogether broken.

Tonight I do the mundane work of filling cracks and covering gaps.  Because I can’t fix Papa’s cancer, but I must fix SOMETHING.  And somehow in the fixing of something, a bit of therapy is found.

      

Nana’s Notes:

Case manager said good report from [Papa’s] therapists:  he has gone from being dependent to needing moderate to minimum help; in each area he does 50 to 75% of the work.

Had good speech therapy session – ice chips – will try sips of water tomorrow.  Talking plainer today.

Played Kings on the Corner [in the afternoon] after speech therapy, got really tired after just a short time, rested in bed until dinner.  Ate dinner in bed, all of sandwich, couple bites of rest, one drink of Ensure shake.

Shower and shave after dinner.

Friends came & visited.

 

Email: (from me to two friends)

Can’t wait for a night out with you ladies!

Think you both got the update on my dad from my mom.  She said he was talking even better today and even walked with a walker a bit.  Very encouraging news and really, he’s made such progress in just this past week.  Yet I’m having a hard time being encouraged when every time I see him he talks about just wanting to die, going so far as to ask me to look up verses on God’s view of suicide…. and as I sit there trying to encourage my dad and trying to give him biblical evidence not to take his own life, I’m thinking, “Really, am I having this conversation with my father?!”  Kind of disturbing, to say the least.  I get that he doesn’t want to live in his current state and heaven is much more appealing to him at the moment, but I’m thinking he might be dealing with depression as well.  My mom has talked to his docs about this so at least they’re aware and can prescribe meds if needed.  

Personally, I’m just feeling mentally exhausted these days – feel like we’re in some sort of strange limbo period.  I know you both went through months and months with your parents in difficult health circumstances, and here I am with only a few weeks under my belt.  I’m grateful to have my dad still here, but it’s hard to see him in this state, you know?  He feels it would be so much easier on us if he was gone, yet I know that wouldn’t be the case.  Loved one gone never equals “easy.”

So anyways, that’s the latest.  Tomorrow we’ll go to the consult apt. for his possible radiation treatment.  I’d be surprised if my dad ended up going for that, but hopefully we can get some questions answered about life expectancy with/without treatment, etc.  Seems crazy to even be typing about that… guess all this is still sinking in. 

Okay, so this email is taking me forever long to write because I’m trying to make what I’m writing coherent and my brain is just not cooperating.  Keep adding a sentence here or there and then deleting it.  Feel like I can’t fully wrap my mind around it all and I guess coherently expressing this whole state of affairs just isn’t possible.  So with all that being said, I’ll bring along my couch to wherever we’re heading on our night out and hopefully you’ll allow me to pay your “shrink fees” in margaritas : )

Take care friends, and you’re both a blessing to me as well!

-Kari

 

My Reflections:

Today I pull out the water beads.

Water beads?

They’re tiny, minuscule beads, itsy-bitsy, that expand to squishy little balls of fun when you mix them with water.  They’re used by florists and such as a vase filler and a way to hydrate flowers, but I’d seen them online as a fun tactile activity for kids so I’d picked some up.  I’m not sure if they’re on our Summer Fun List, but today seems the perfect day to make use of them with the boys.

And the water beads don’t disappoint in keeping these boys entertained (for a little while anyway).

Novel fun for my boys:  Check!

 

Later in the day, I’m cleaning up the kitchen after dinner.  The phone rings:  It’s Nana.

“Did you get the email from [your 2nd cousin]?,” she asks.

And I haven’t had a chance to check.  I don’t know what email she’s talking about.  But later I’ll see it:

Hi [Nana] & Kari, 

Many thanks for the updates. We are praying hard for all of you right now and hope [Papa’s] recovery continues to progress. As my mom would always say….prayer and patience. Please continue to keep me in the loop on his progress. I have been checking my mom’s email, but with her passing (hopefully you received that email earlier today), I will cease that once I return home.

Sending you lots of hugs, prayers and good thoughts!

Love,

[Your 2nd Cousin]

And Nana goes on to tell me that her cousin has passed away.  The cousin Nana is so close with, whom she grew up with and shares so many memories with.  The cousin who’s been battling cancer for over two years now, doing all kinds of specialty treatments, flying out of state for state-of-the-art treatments.  The cousin whom Nana & Papa planned to visit on their cross-country road trip right about now… before Papa got sick.

And in the midst of all Papa’s gone through these past few weeks, we hadn’t realized how sick she’d become, that she was so near the end.

And now she’s gone.

And Nana didn’t even have a chance to say good-bye.

And what about the funeral?  The upcoming funeral that Nana would so want to be at?

With Papa’s current condition, it just won’t be possible…

And I can here the deep sadness in Nana’s voice, her voice breaking as she tells me all this, and the sadness wells up in my own heart too.

And we somehow say our goodbyes and I hang up.  And that darn dam once again begins to crack.

J and the boys are in the family room unaware, and I rush upstairs; rush upstairs to let that dam break.  Because it’s okay for my boys to see Mommy sad, but they don’t need to see this.  They don’t need to hear the scary, raw emotion, the uncontrolled spilling out of my sobs.

I steal away in my closet once more, there under my sweaters, skirts, and dresses; there on the floor across from my shoes.  Sobbing and wailing into a pillow hugged close to my chest.

Heart breaking for the loss of my mom’s cousin, such a wonderful person always with a warm smile and welcoming presence.  Who with her kind words had been one of my biggest cheerleaders in my blogging, ever-encouraging in my writing.

Heart breaking for her children, and grandchildren, husband, and Nana and so many others who were close to her and so blessed to have known her.  And who would now miss her unspeakably much.

Heart breaking that she’d struggled and fought and battled her cancer for more than two long years and still hadn’t beat it.

She had battled as hard as anyone could battle and she still hadn’t won.

And added to the tears is the realization that here we are now with Papa, tomorrow going with him to speak with oncologists and discuss treatment options, chemo, radiation, special drugs.

And I wonder what it’s all for.  If it will just be to see him suffer and fight and in the end still not win his battle?

And somewhere in that moment, amidst the throat-catching sobs and puddle of tears, it hits me:

I’ll never be ready to say goodbye.

Treatment or no, I’ll never be really ready to say goodbye to Papa.  Not now, not 6 months from now, and not even 2 1/2 or 10 years from now if by some miracle he lives that long.

Because life is precious and he means so much.  Just like Nana’s cousin had meant so much.  And no matter when their lives are called to an end, none of us can be ready to say goodbye to those we love.  Because their absence does, and will, leave such an enormous hole.

And isn’t that right there a testament to the lives they lived?  Lives lived well.

For those left behind, who is ever ready for that to end?

Eventually J comes and finds me.  Cause he’s good like that.  And we talk, right there on the closet floor and I cry some more.

As J helps me talk things through, I realize something else.  I realize I’ve already had to say goodbye to pieces of Papa that have already been lost.  The grieving has already begun.  And I want my daddy back and he’s not here anymore.  Yes, Papa is still here, but he’s not fully the Papa we once knew.  And I’m not talking about just his physical limitations, but more so his mental, cognitive and emotional state of being.  He’s still Papa, but it’s obvious that his tumor and surgery have caused changes in his brain, in his thinking.  And I know, most likely,  the “Papa” I once knew will never fully return.

I feel the pull.  Papa’s here and I don’t want him to go, whatever his present condition, but he’s suffering and miserable and doesn’t want to live like this.  On the outside looking in, it’s easy to say, “buck up,” “keep fighting,” “God’s still got you here for a reason” (and Nana’s tried that approach w/ him a time or two), but anyone really seeing Papa’s condition, really putting themselves in his shoes, can’t deny that Papa has a point: this is no way to live.  It’s hard to see him suffer.

But life is a gift, and Papa’s still with us, and I’m truly grateful for that.  I might have already said goodbye to pieces of the father I once knew, but his presence still remains.  And the final goodbye has not yet needed to be uttered.

But I wonder.  I wonder how long these little goodbyes of fragments of Papa will go on before the final goodbye is upon us?  How much more suffering and limitations will he have to endure before that time comes?  The future holds no certainty or answers.  All we’re left to do, all we can do, is take the days, with their goodbyes, one by one as they come.

Today that time has come for Nana’s cousin.  And it’s with tear-filled eyes, and tear-stained cheeks that we breathe our final goodbye to her.  And we pray for her family this day and in the days and months ahead, our hearts breaking with the pain of death and a battle hard fought and lost [“lost” at least by the world’s standards].

 

Nana’s Notes:

Papa very tired when I got here – discouraged about how PT went.  Seemed more tired, discouraged, than yesterday.

Ate a good lunch.

Neighbors visited.

Kari & the kids came – went outside, they fed the fish, then we went to the family room & played games.  Kari & Papa visited.

His dinner was here when we got back.

I left about 5:30 PM.

 

Email: (from Nana to friends and family)

Hi, from computer illiterate me!

I have tried several times to give more updates, but I always run into problems.  Tonight I am at Kari’s where she can help me.  

Papa is doing quite well, physically, though his speech is still garbled, and he doesn’t have the strength to walk on his own.  He looks great, and even though he has made great progress in the past week since entering the rehab, he is sure he will never be back to normal or have the quality of life he wants.  Therefore, he is very discouraged and just wants God to take him to heaven so I and the rest of the family will not have to deal with that.  He doesn’t want his grand kids to remember him this way.  He thinks the therapists (speech, occupational, physical, & psychological) are lying to him when they tell him he will get better–it just takes time.  At least he has not given up doing the therapy!  He works with it and the therapists enjoy working with him.  It is hard work for him and he gets very tired.  I think he is having a hard time not being able to think and react like he used to.  Seemingly simple things are not anymore.  Papa has never been one to shy away from hard work and usually likes a challenge, saying “I’m going to beat this thing!” but that isn’t the case now.  Brain trauma usually does alter one’s personality, and I guess that is the case here.  I just pray he will continue working and see great results! 

This week we have a consultation appointment with a radiation oncologist to discuss treatment.  Kari will be joining us.  The rehab will transport Papa.  Please pray for wisdom and knowing God’s will in that.

A nurse friend of mine asked what type of tumor Papa had.  It was an anaplastic astrocytoma–grade 3 or 4.  The neurosurgeon is recommending 6 weeks of radiation, 5 days a week, with concurrent chemo lasting 6 mo. – 1 yr.  He wants Papa to be part of a nation-wide clinical trial.  The chemo he is recommending is temodar (a pill form of chemo).  Even though he is sure he got all the tumor it is likely there are residual cancer cells present.  This type of tumor usually reoccurs in 3 to 5 years, even with treatment.

Please pray for Papa’s encouragement, strength and healing and for our (Kari’s and mine) strength and ability to understand what Papa is trying to say to us, and that we will all grow and learn what God has to teach us through all of this.  Lots of opportunity to trust God!

Love,   Nana

 

My Reflections:

This morning I juice up some concoction of beets and celery and carrots, lemon, apple, kale, and parsley, ginger and who knows what else.  Because I need the energy; cause runnin’ on Dunkin can only get me so far.

 

I bring the boys with me for another rehab visit.  And Little M falls asleep on the way:

 

And so does C Bear:

This is what nap time looks like sometimes.

 

But they rally and we take Papa for another stroll:

 

And at some point while we’re sitting there, visiting outside, Papa starts talking about something.  With just me.  And, as usual, I’m trying to catch the gist.  He’s talking about wanting to know Biblical support for it either way.  And I realize he’s not talking about the general will of God stuff, like Nana & I thought he was questioning a few days ago.  I realize this is something much more serious.  And I try to make sure I’m hearing him right, asking him to clarify while making sure my boys aren’t in earshot to hear their mom ask their Papa this; and I don’t want to ask, I can’t believe I’m asking my father this, but I make myself ask anyway because I need to know, and Papa wants me to understand….

“Are you talking about taking your own life?!”

Am I really asking this?  

Seriously?

And Papa’s eyes get that look of “You understand what I’m saying!,” and he emphatically nods and points his finger at me and says,

“YEAh!”

And I can’t believe I’m here, having this conversation.

Where the heck am I anyway?

This is CRAZY talk!

And it’s my father who’s talking to me….  About wanting to commit suicide.

And I don’t want to go there, but I need to know, so I ask further, “Have you thought of ways to do it?”

And he nods again and says, “YEAh.”

YEAH?!

And if I was concerned just a minute ago, I’m REALLY concerned now.

But just like that, the boys come over and the subject must be changed… Now!  ASAP.  So it is, and I’m there, left hanging.  Hanging with Papa’s acknowledgement that he so hates his current state that he’s using his free time thinking up ways to kill himself and end it all.

Unsettling doesn’t even begin to describe it.

Later I’ll talk to Nana and let her know and have her make sure Papa’s doctors know.  Cause maybe this is depression speaking.  Maybe his brain is so injured he’s not thinking straight. But what if he is serious, right mind or not, and is actually capable of carrying out whatever plans he’s been planning up?

What if?

What happens when he finishes up rehab and goes home?

What then?

But that conversation with Nana has to wait till later today.  Right now there are little ears that don’t need to hear even a breath of this sort of talk.  Little boys that love their Papa and smile when they visit him, no matter what condition he’s in.  And today they smile, right here, for another group photo before we go.

And I do too.  Cause sometimes that’s just what you’ve got to do.

Nana’s Notes:

I got to rehab at 8:00 AM so I could see the doctor.  Papa was in wheelchair eating breakfast -feeling very good after a good night sleep.  Ate most of his breakfast except the drink (he doesn’t like the thick drinks).  Had a full morning of therapy.

Had multiple visitors in the afternoon.  He was alert & enjoyed the visits.

Had a good day, ate well.

Nana’s Notes:

Papa in good spirits.  Therapy went well – tired after, but didn’t get in bed until about 8:30 PM.

Kari & family visit earlier in day.

Friends visit around 5:00 PM, other friends come about 6:00 PM.  Good visits – Papa alert.

Papa discussed with friends if it is right for us to end our own life, one friend gave some verses [about this].  Papa wants verses on this from his siblings, the pastors, Kari & J.

He ate about half or more of his food today.

 

My Reflections:

Nana’s been staying at our place the past few nights.  She’s with Papa during the day at rehab and spends the mornings and evenings with us.  It’s nice to have her around more.  And I have a feeling it’s good for her to get her “Nana fix” too.

Later today, J, the boys and I join Nana at the rehab.  Papa’s in a therapy session when we arrive, so we munch on sugared cereal (boys) and hummus and pretzels (me) in the cafeteria and watch sports on the TV hanging on the wall.  When Papa’s finished with his therapy, we meet up with him in his room.  And I’m so glad the boys can see Papa in a better state than their last visit – what a difference a week makes.  So we visit and then get real adventurous and take Papa for a wheelchair stroll outside.  Outside beyond the laminate flooring, white walls, and sterile halls he’s become so accustomed to.  We stroll, we chat, we sit.  And our big boys get bored and tired and hot and hungry.  So we let them enjoy some “screenery” over the scenery to hold the whining at bay.

And we don’t stay much longer, but long enough, and then we say our goodbyes and head home.

And once home, I don’t even feel the need to eradicate any shrubbery from our landscaping.  I’ll count that as a win.

Indeed, what a difference a week makes!

Nana’s Notes:

Papa did well in therapies – I got to be with him.  Played Rummikub in OT & counted money & manipulated pattern blocks – drew a design from memory.

Talked about “Is it worth it?”  Asked therapists, tries to figure it all out.  Kept talking about it.

 

Nana’s Notes:

I stayed at Kari’s last night – made brownines for Papa.  The speech therapist suggested we bring things to him to eat that he likes because he is still not eating well.  Doesn’t have an appetite.  He takes two or three bites of each thing & that is it.  They give him nourishment through his tube.

Papa needs 50-75% help with each thing.  He does feed himself, but they want him monitored.  They walked with him about ten feet yesterday, but “it wasn’t pretty,” the therapist said.  His right side is still weak.  I pray he works with them and believes he will get better!

Kari here [this afternoon].  Papa talked again about “is it worth it?”  Wants to go to heaven.  “Is God in control of everything?”  “We have choices,” he said.  Wants me to talk to family about what he said.

He went to group psychology; two other men were there waiting for the therapist and Papa talked to them, asking them what happened to them, etc.  Talked a lot, telling them about his situation.  The psychologist encouraged the group (5 guys) to get to know one another and encourage each other in the gym.  There were guys there with helmets on and Papa asked them why they wore them, asked them if it was temporary.  Was told it was due to too much pressure on their brains, so part of their skulls are missing.  Only skin is protecting their brain [currently] and part of their skulls are in the freezer awaiting replacement.

One of the guys said, “You have no choice [but to work hard].  If you don’t walk out of here, you limp out of here.”

Hopefully Papa will pay attention!

He moved himself in his wheelchair there & back for the psychology group.  Not too far down the hall, using his feet, no hands.

I wrote out for Papa the conversation I had with Mark on the phone [last night] so he could read it:

I talked to Mark about what you said about it not being worth it & you just wanted to go to heaven.  He said you are being selfish.  “We still want you around.  If you give up, you are not being a good witness.  A bad attitude doesn’t glorify God.  It sounds like you are telling God what to do rather than letting Him tell you.  Even though I am [a grown man], you are still an example to me and you need to be a good one. Grow a pair!  Be a man!  If you get well and do well, I won’t have to buy two of the most expensive one-way tickets I can find for you to pay for!  We still have more places to go [when we visit you] that I have seen on the food channel and by then they might even taste good to you.”

 

 

My Reflections:

I visit Papa again at rehab.  And he’s talking A LOT.  As in so much that it’s absolutely exhausting to try to absorb all that he’s trying to say.  I nod a lot and try to remember what the ER doc said about not pretending you know what he’s saying when you don’t.  But it’s hard to ask him to repeat and to clarify when he just keeps talking.  And talking.  And talking.

They (the doctors) say this is normal for brain injury as the brain is healing.  It’s strange to think of Papa as having a brain injury, but in the growth and removal of Papa’s cancerous tumor, that is exactly what has happened:  his brain has been injured; and now it needs time to heal and to recover.

There’s one thing Papa is trying to get through to Nana & I and we work hard to understand.  Something about knowing God’s will in all of this.  And he wants Nana to email all of his siblings and ask them to give their insights about this, with Bible verses to back it up… nothing like giving your siblings a little homework.

Papa gets tired, as he often does late in the afternoon, and Nana & I say our goodbyes so he can get some rest.  And I have to admit that I’m ready for a rest myself.

If no one says one solitary word for the next hour or two, I’d be totally fine with that.  

Listening sure can be exhausting!

Nana’s Notes:

PT two times out of room – had him dressed in T shirt & shorts – he was able to help with shirt, but not shorts.  Had him in depends (he did not like that).

When I came in, he was discouraged.  Came back from second PT & therapist said that Papa said it wasn’t worth it – he just wanted to go home & die.  Didn’t want his grandkids to remember him that way.  

Therapist and I gave him a pep talk & he was better the rest of the day, willing to work with it.

 

Email: (from me to a long-time family friend who’d specifically asked how she could pray):

Prayer requests:  

For God’s will to be done and for the rest of us to be at peace with that.  Right now Dad is pretty uncomfortable & miserable/discouraged.  Not able to talk well, understand well, eat well, get around well, take care of bathroom business well…. can do all somewhat, just not very well at this point & has to be dependent on a lot of other people for help – hard enough for anyone, but I’m sure for men it’s even harder.  Has a long road ahead of him to get some of his faculties back and battle this cancer, so encouragement from above for all of us would be greatly appreciated!  

Mom is doing pretty well, you know how strong she is and how she can take things in stride & depend on God even in the worst of times.  But I know it’s hard on her too (of course!) – Dad isn’t the happiest patient right now… good thing Mom is such a patient person, but I know it’s hard for her to see dad in such discomfort and in such low in spirits.  She was at the hospital the whole time my dad was there after surgery (which = not much sleep).  She’s been home the past couple of nights since Dad’s been at rehab and she’s staying at our place the next few nights (we’re a bit closer to the rehab facility than their place is).

I’m definitely feeling more at peace the past couple of days (thanks to prayers, I’m sure, and also the fact that Dad is more stable now and able to be in rehab).  Could use prayers for discernment to understand what my dad’s saying (can often understand the gist of what he’s talking about, but there are other times when I/we don’t have a clue!).  Also for balance with focusing on my family of J & the boys and focusing on being a support for Mom & Dad (have had wonderful help from extended family and friends watching the boys for me and have been able to get to the hospital/rehab every other day thus far).

Okay, Little M is sleeping and big boys are at the beach with J’s dad & stepmom.  Need to make the most of nap time and get myself ready before somebody decides to wake up!

Take care and thanks for your love and prayers!

Love,

Kari

 

My Reflections:

Nana’s at our place in the morning and makes one of Papa’s favorite meals,  homemade macaroni and cheese:

 

Even though Papa’s still at risk with silent aspiration, he’s being encouraged to eat by his medical staff to get his nutrition up and his swallowing strengthened.  The nurses have encouraged Nana to bring in some of Papa’s favorite (& easy to chew/swallow) foods that might appeal to him more than the standard hospital fare.  Mac & cheese seems to fit the bill perfectly.

Papa is excited to see it when Nana brings it in, but he still doesn’t eat much.  We half-wonder if he isn’t eating due to his lack of will to go on like this….

I come in in the afternoon (the preferred time for visitors since Papa’s occupational, physical, and speech therapists all meet with him in the morning).  This particular afternoon there’s round table discussion available for the families of patients.  All the therapists are present and each family that attends rotates around the room to have individualized time with each.  Even though Papa just arrived a couple days ago and has barely begun his therapy sessions, it’s still a good opportunity for Nana and me to attend, and we do.

The therapists obviously don’t know Papa very well yet, but they each fill us in on what they are, or will be, working on with Papa and their goals for him:  for him to take a few steps with a walker, use a fork properly, identify and pronounce letter sounds correctly, etc. and so forth.  We rotate tables going from one therapist to another, listening to them and asking our questions.  I’m not sure what it is, but as one therapist describes Papa’s current condition and what to expect, etc., I try to look attentive, try to look pleasant, but inside I feel like an annoyed and defiant teenager.  I want to slouch in my chair, cross my arms across my chest and glare her down.  I’m thinking it but not saying it,

“This isn’t my father you’re talking about!  You don’t know anything!  You have no idea how brilliant and capable and independent he is, or at least was, just a few weeks ago!”

My inward ranting is quickly cut short though as Papa’s case worker (or similar representative) who is also present at the table interjects something about Papa being a mechanical engineer and how he’d hopped back from his retirement into consulting work for an important project just a few months earlier.  I don’t know how she knows this, but assume she’s at some point talked with Nana about the pre-cancer-diagnosis Papa.  And I’m so grateful.  I’m grateful that she seems to get it.  That she knows this current version of Papa isn’t who he really is, who we really know him to be.  That Papa isn’t just a man with a brain injury who can’t talk straight or go to the bathroom straight.  He isn’t just a cantankerous old guy who gets annoyed with his nurses and doesn’t realize that there’s food on his face when he’s trying to feed himself.  That this man still has dignity worth acknowledging, right here in a round-table discussion with his therapists who know nothing about him except the limitations they’ve seen in him during one or two therapy sessions.

And I later walk the halls of the rehab, past a girl with legs strapped wide in a wheelchair, head cocked back and to the side, mouth limp and open; past a teenage boy, eyes a bit distant and head wrapped big in gauze bandages being pushed in a wheelchair by his father; past an old man, shuffling his feet in his wheelchair down the hall, looking eccentric and disheveled….

And my eyes are opened wider.  And I realize what I haven’t seen before:  that these aren’t just invalids I’m walking past in a hospital corridor.  This isn’t necessarily the “them” their families know them to be.  Very likely they too have a brilliant, capable and independent past.  And even in this current state that no one would choose for them, they have dignity all their own.  They’re people and they’re valuable and they are loved.

I need my eyes to stay open.  Open wider.